← Return to Does anyone have nutcracker syndrome?

Discussion

Does anyone have nutcracker syndrome?

Kidney & Bladder | Last Active: Mar 21 2:18pm | Replies (38)

Comment receiving replies
@bpaz

Thank you! I appreciate your help and I am waiting for a call with Mayo Clinic to see if they can help me find an available provider.

I have been experiencing pain for a long time but these past 3 months have been rough, which led me to a long, drawn-out process of test after test. I did a CT scan and I too was diagnosed with Pelvic Congestion Syndrome. I was referred to a Vein Center to be treated for the syndrome, however, after this new provider reviewed my CT scans, he also diagnosed me with Nutcracker Syndrome (NCS) and May Thurner Syndrome. (So I went in with 1 syndrome and left with 3). The provider literally told me to go home and "Google" it and said that he wouldn't be able to help me. He said he wouldn't correct the May Thurner Syndrome until my leg was swollen and in extreme pain, and also told me to go on birth control (hormones) to at least treat the PCS ... which my PCP strongly disagrees with due to hormones causing clots, mixed with my other syndromes, would put me at a high risk of stroke.... But anyways, he said no one would be able to treat the NCS. This obviously made me feel pretty defeated, but I started doing my own research and spent an entire day calling all across Arizona looking for someone who a) knew what I was talking about and b) didn't think I was a nutty-nutcracker/crazy person (I can't blame them, I mean it sounds like a joke diagnosis). But, I stumbled upon 1 provider here at Mayo Clinic in Scottsdale, but apparently he's been doing an out-of-state fellowship for the past year or so. So I seem to be out of luck for the time being.

I hope you are able to get the care you need and I will be curious to hear if your new provider will be able to treat your PCS. I have learned there are a few options to treat PCS, but haven't been able to determine the best route. Looking forward to hearing positive news from your journey!

Jump to this post


Replies to "Thank you! I appreciate your help and I am waiting for a call with Mayo Clinic..."

Thank you for the encouragement! I will let you know what I find out… I have a virtual visit soon with a women’s health provider from Mayo. But I have a feeling she’ll say we need to wait until I can be seen in person to rule things in/out and before possibly sending me back to the interventional radiologist!

I’m so sorry about your pain and the apparent flippant dismissal—sometimes I just wonder, don’t they have a network? What happened to trying to find someone to refer a patient to if you can’t help them??

I would feel pretty defeated too. I hope you can find someone who treats these conditions. The funny thing (or not funny) is I’m pretty sure the IR I’m going to talk to here in my home state treats all the three syndromes! So…if you ever want to road trip it to Chicago, let me know and I’m happy to send you her name/info. She’s really nice, from what I can tell in our messaging so far.

Keeping my fingers crossed for you that Mayo AZ will have someone.

I also was diagnosed with PCS before the Nutcrackers. Did you get any treatment for the PCS?